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Wednesday, September 14, 2011

30 Things

Lisa Copen created a list called, "30 Things About My Invisible Illness You May Not Know." She and her bloggy friends are filling it out and posting it on their blogs and facebook pages as a way to raise awareness of invisible illnesses. My list is below. You can go here to find others who have written about their 30 Things.

1. The illness I live with is: Dysautonomia. My doctors believe that it is caused by a Mitochondrial Disease.

2. I was diagnosed with it in the year: 1995.

3. But I had symptoms since: 1992 or earlier.

4. The biggest adjustment I’ve had to make is: giving up a lot of my independence.

5. Most people assume: People who haven't known me for long assume that I should get better someday. I just need the right doctor, the right medicine, the right supplement, or more prayer.

6. The hardest part about morning is: staying asleep. I currently need 11-12 hours of sleep, but the sun doesn’t stay down that long, and the world doesn’t stay quiet for that long.

7. My favorite medical TV show is: I do not usually like medical TV shows.
8. A gadget I couldn’t live without is: my laptop. Using my laptop in bed allows me to keep in touch with the outside world via facebook, twitter, blogging, and email. Without my laptop and internet access I would be very isolated.

9. The hardest part about night is: being tired and exhausted and not able to just lie down and fall asleep.

10. Each day I take 5 different medications, 1 multi-vitamin, and 9 supplements.

11. Regarding alternative treatments I: have found that many of them are either scams or they work for only a very few people. There aren’t magic pills or treatments that cure all chronic conditions. There are some vitamins, supplements, and other natural treatments for dysautonomia, but good doctors already know about these and they advise their patients to try them.

12. If I had to choose between an invisible illness or visible I would choose: invisible. If I have to feel awful, at least I can look good.

13. Regarding working and career: I don’t feel like I am missing out on a career. I like being a stay at home wife and mom. I just wish I had the strength and energy to do all the wife and mom stuff I’d like to do.

14. People would be surprised to know: that I walk around my apartment. I use a wheelchair when I go out because I can’t walk very far or stand for still for more than a minute or two. If I am in my wheelchair I am free to wait in a line or stop and talk to people on my way in to church.

15. The hardest thing to accept about my new reality has been: being isolated from friends.

16. Something I never thought I could do with my illness that I did was: get married and have children.

17. The commercials about my illness: do not exist. Dysautonomia isn't all that rare, but it is not well known.

18. Something I really miss doing since I was diagnosed is: ice skating.

19. It was really hard to have to give up: my dream of having 6 or more children in my arms.

20. A new hobby I have taken up since my diagnosis is: blogging.

21. If I could have one day of feeling normal again I would: go to the beach with my family.

22. My illness has taught me: that all human life is so precious and that suffering has purpose and value.

23. Want to know a secret? One thing people say that gets under my skin is: “if you had enough faith then you wouldn’t be sick.”

24. But I love it when people: ask if they can take me out somewhere for fun or come to visit me.

25. My favorite motto, scripture, quote that gets me through tough times is: “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all" (2 Corinthians 4:17-18, NIV).

26. When someone is diagnosed I’d like to tell them: “I’m so sorry that you have to walk this road. It is worth it, but it hurts. I will be praying for you.”

27. Something that has surprised me about living with an illness is: how easy it is on some days and how incredibly hard it is on other days.

28. The nicest thing someone did for me when I wasn’t feeling well was: come to my home and bring a tea party to me in bed.

29. I’m involved with Invisible Illness Week because: I think it is important to spread awareness for dysautonomia and other invisible illnesses, and because it is fun to work together on this with others who suffer from invisible illnesses.